Our son Matt has brought such joy to us and through him we have learnt so many things about ourselves and life. He has a rare genetic syndrome called Rubinstein-Taybi Syndrome. This blog is where we process the things we have learnt, where we share our challenges and pains, and where we celebrate small victories.

Wednesday, March 18, 2015

This is something that Rose-Anne Reynolds, who heads up Inclusion at Matt's school, (and who blogs here), mentioned to me as we met last week to reflect on Matt's school experience. What she said resonated with me.

Yesterday's mistakes are today's aha moments...

what does this mean?

it means that you don't know the way

it means that you are comfortable with uncertainty

it means you are humble because you cannot be sure

it means you cannot dress yourself with arrogance and superiority because they just don't fit well

it means that you when you try something you are not assured of success

it means that you take a risk

it means you have to be ok with things not working out

it means that you might face failure

and when things haven't worked out then it means that you don't
fall apart
become discouraged
feel like a failure
give in to the fear
or give up

it means that when something hasn't worked...
you stop and look
and learn
and ask questions
and learn more
and dream again
and get creative
and then you try something else
knowing that this something else might not work,
but then again, it might

I am grateful to Matt's teachers who really do live out this belief and do not shy away from taking on the unknown. We have tried some things with Matt, and then have had to change part of it, and then tweek another part, and then start doing something new, and then change that, and then alter one part and and and... Last year Rose-Anne and I met at least once a month to do this. She met regularly with his facilitator and teacher. I chatted with the facilitator daily. I met with the teacher at least twice a term. It took time. It took effort. But it was worth it.

As a parent I found the beginning of the process frightening. Matt is so precious to me, I wanted to protect him from anything that might harm him. In some ways I saw him more vulnerable than other children. That if we didn't get it right the first time then we would somehow damage him or make his condition worse. It was hard for me to let Matt go into the unknown.

But I didn't have a choice - there were no guarantees. Fortunately Rose-Anne and her team modelled the freedom of not being scared for failures. This gave me courage.

I came to see that Matt is really not as fragile as I thought.
In fact he is rather resilient.
And I came to see he could show us the way too.
And so we have had many aha moments
And Matt, and I, and the school are all better for it.

Saturday, March 14, 2015

I love this picture of Matt participating in a his school's swimming gala at the end of last year. For me it symbolises inclusion. The question was never - should Matt participate in the gala? nor was it can Matt swim well enough to be included?

His inclusion was a given.

The question was what support does Matt require to participate?

And in this picture you can see what supports were put in place... a kick board, flotation ring, and a friendly pair of arms (just in case).

And Matt was BEAMING.

Especially at the end of his second race when all of his classmates and children from other classes were all chanting GO MATT! GO MATT!

Love

The Bible says that if we have not LOVE then we are nothing "If I speak in the tongues of men and of angels, but have not love, I am only a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing. If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing." 1 Corinthians 13: 1-7

nothing nothingWe are nothing without LOVE

It does not say if we learn to crawl long after most children crawl we are nothing It does not say if we struggle to learn how to speak we are nothingIt does not say if we grow up dependent on others we are nothingNo it says if we have not LOVE then we are nothing

This is helping us to free ourselves from worrying about Matt's development.

Rather, our goal is to let Matthew know he is LOVEDAnd to help him unlock the deep well of LOVE that God has placed in his heart...For then he will have LOVE and he will be something

Followers

RTS in South Africa

Connect more with others who have family members with RTS. Find out more about what resources there are in South Africa. Visit the RTS South Africa website:http://www.rts-southafrica.weebly.com/